hh.sePublications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Family caregivers experiences of formal care when caring for persons with dementia through the stages of the disease
Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
The Pufendorf Institute of Advanced Studies, Lund, Sweden.
Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.ORCID iD: 0000-0002-6624-9963
School of Health and Society, Kristianstad University, Kristianstad, Sweden.
2016 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 3, p. 526-534Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Family caregivers' experiences of formal care when caring for persons with dementia through the process of the disease is sparsely investigated.

AIMS: To investigate family caregivers' experiences of formal care when caring for a person with dementia, through the stages of the disease.

DESIGN: A qualitative approach with focus group interviews.

METHODS: Four focus group interviews were conducted in October 2011 with 23 spouses and adult children of persons with dementia and analysed with content analysis.

RESULTS: The participants' experiences of formal care when caring for a person with dementia were captured in the theme 'Familycaregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia'. This can be broken down into the categories 'The dementia diagnosis - entry into formal care as a novice family caregiver', 'Needing expanded collaboration with formal care to continue care at home' and 'Being dependent on a nursing home and trying to maintain involvement'.

CONCLUSION: Family caregiving requires collaboration with formal care to get support adjusted to the individual's needs, specific to the stages of dementia. Caregivers experience a transition process with three main turning points: the dementia diagnosis; when they realise increased need for formal care to continue caring at home; and when the person with dementia is moved into a nursing home. The interviewed caregivers experience formal care reactive to their needs and this often promoted unhealthy transitions. Formal careneeds to be proactive and deliver available care and support early on in the dementia trajectory. Interventions should focus on facilitating a healthy transition for family caregivers through the trajectory of the dementia disease to ensure their well-being. © 2015 Nordic College of Caring Science.

Place, publisher, year, edition, pages
Chichester: Wiley-Blackwell, 2016. Vol. 30, no 3, p. 526-534
Keywords [en]
family caregivers, experiences, formal care, dementia, Alzheimer’s disease, trajectory, nursing, qualitative research, focus groups, transition theory
National Category
Nursing
Identifiers
URN: urn:nbn:se:hh:diva-31592DOI: 10.1111/scs.12275PubMedID: 26346507Scopus ID: 2-s2.0-84941082921OAI: oai:DiVA.org:hh-31592DiVA, id: diva2:947055
Funder
EU, FP7, Seventh Framework ProgrammeEuropean Science Foundation (ESF), 09-RNP-049
Note

Funding: European Commission – the 7th framework, Greta and Johan Kochs foundation, The Swedish Institute for Health Sciences, European Science Foundation Research Network Program ‘REFLECTION' (09-RNP-049).

Available from: 2016-07-06 Created: 2016-07-06 Last updated: 2017-11-28Bibliographically approved

Open Access in DiVA

No full text in DiVA

Other links

Publisher's full textPubMedScopus

Authority records

Karlsson, Staffan

Search in DiVA

By author/editor
Karlsson, Staffan
In the same journal
Scandinavian Journal of Caring Sciences
Nursing

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 75 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf